"Information Overload"

Oh, my goodness! "Information overload " is the best way to describe our Riley appointment Monday. 

Owen did great on his swallow test! Which was a huge answer to prayer.

After the test we met with a speech therapist who specializes in feeding issues of kids with clefts. (Both of her daughters had cleft palates.) For 2 hours I tried to wrap my brain around the new feeding plan she was laying out. It is very involved. I know that in no time it will become like second nature, but it is a big shift from what I'm used to. It will take some adjustment for our family. I won't bore you with the details, as I am not sure I could even re-iterate it all.

Exciting things of note however: Owen gets to start real solids like pancakes and Rice Krispies and even natural Cheetos. Yes, Cheetos! (not the orange kind though.) It seems super strange to me to feed my 6 month old Cheetos. And I don't think I'll offer them as much as she suggested, but he really seemed to like them.

Basically she set up some oral-motor skill goals for us to work towards, which is exactly what we need to get off the feeding tube. An interesting revelation... she explained that he will never be able to enough nutrition from a bottle to get off the tube. (which I previously thought was our goal.) Instead we need to work toward him getting his calories and nutrition from solids. Then after his palate repair, it won't be too long before we can remove the feeding tube. So we still have a long row to hoe, but we're getting there.

She also wants me to tell our home speech therapist to stop some of the treatments (like the vibrator and gum brush). This is the second time I've been "put in the middle" of one of our therapists and the doctor. Not my favorite place to be. The trick is our First Steps therapists don't "work for" our Riley doctors, and they all seem to have different agendas. I hate being in the middle. But they all kind of "work for" me I guess, so I'm just going to have to learn to be assertive and discern what is BEST for Owen, no matter who's idea it is and get everyone on board with that.

I was reading a book from the library today about being a parent of a special needs kid. Got to the part about advocating for your child's rights and options with doctors, hospitals, schools, etc. I guess this is something I need to get good at sooner rather than later. Just doing my best to do what's best for Owen. This is going to be my life-long job.

Please pray for Eric and I that we will be able to discern the "right" path to take for Owen when presented with conflicting and confusing information. For peace with our decisions. And for wisdom and confidence in relaying our wishes to his caregivers.

After seeing the speech therapist, we saw our plastic and oral surgeons in craniofacial clinic. They gave the go ahead to get Owen's gum stabilization surgery scheduled. So after insurance pre-approves the procedure, we'll get that scheduled. It should be in the next few months. Yippie!

I posted some new photos, check them out.